Pachyonychia Congenita Project

Pachyonychia Congenita Project PC Project supports people living with PC and other rare, painful palmoplantar keratodermas while driving research toward effective treatments to End the Pain!

"What I wish people could see or know about PC is the unpleasantness it causes - the disruption, not being able to do or...
06/10/2026

"What I wish people could see or know about PC is the unpleasantness it causes - the disruption, not being able to do or wear nice shoes like other people. I have to wear special shoes because PC is in between my toes, so normal shoes don't work. I am bullied, laughed at, and made to look stupid. This is something I wouldn't wish upon anyone.”

-Patricia Talbot, United Kingdom

06/10/2026

“What people don’t see is that to live a “normal” life is pretty painful.”

- Dr. Kieren Eyles, UK

"Lo que ves es el resultado de mi resistencia y adaptación, pero lo que la gente no ve, es el esfuerzo monumental y diar...
06/09/2026

"Lo que ves es el resultado de mi resistencia y adaptación, pero lo que la gente no ve, es el esfuerzo monumental y diario que se requiere para intentar tener una vida lo más normal posible. Mi enfermedad no es solo un trastorno físico, es una maratón diaria que se corre en silencio y paso a paso con dolor constante."

– Pamela Ibanez, España

One of the hardest things about living with PC is that most people only see a tiny fraction of what we go through.They s...
06/08/2026

One of the hardest things about living with PC is that most people only see a tiny fraction of what we go through.

They see us show up.

What they don't see is everything it took to get there.

Those of us with PC don't want others to feel sorry for us. Instead, we want to inspire action. That's why, even though it's hard and not something we usually do, this month we're one story at a time.

When people understand what life with PC is like, it becomes easier to build empathy, support research, improve accommodations, and help individuals and families feel less alone.

👉 Share your answer to “What people don’t see is…”

Upload your statement or video here https://survey.alchemer.com/s3/8856640/PC-Awareness-2026 (or through the link in our bio).

Rare diseases like PC become less invisible every time someone learns what living with it is really like.

“What people don’t see is the pain in my daily life and how it controls my decisions, my social life, and the whole me -...
06/07/2026

“What people don’t see is the pain in my daily life and how it controls my decisions, my social life, and the whole me - and I cannot do anything to change it.” - Karin, Sweden

“What people don’t see is that I want nothing more than to run and play with my daughter, but sometimes the pain in my f...
06/05/2026

“What people don’t see is that I want nothing more than to run and play with my daughter, but sometimes the pain in my feet won't let me.”

-Burak Harmankaya, Türkiye

A clinical trial specifically for patients 18 and older with TRPV3/PERP gene variants (Olmsted Syndrome) has begun in UK...
06/04/2026

A clinical trial specifically for patients 18 and older with TRPV3/PERP gene variants (Olmsted Syndrome) has begun in UK, France, and the United States. If you are an affected individual and are interested in learning more, please fill out this simple form: https://registry.pachyonychia.org/s3/StudyInterest-TRPV3-PERP

Filling out the form does not obligate you to participate. It merely allows us to provide you with more information.

If you are a medical professional with a patient, please contact us at [email protected] right away.

06/04/2026

“What people don’t see is the shame that we feel with PC” - Max, PCer

When some of the world’s leading rare skin disease scientists and dermatologists spread PC Awareness by wearing our PC P...
06/03/2026

When some of the world’s leading rare skin disease scientists and dermatologists spread PC Awareness by wearing our PC Project tags and T-shirts at major conferences, we feel pretty special!

“What people don’t see is that ‘normal’ comes at a cost - and it’s a cost I pay every single day.” - Jack Padovano, PC P...
06/02/2026

“What people don’t see is that ‘normal’ comes at a cost - and it’s a cost I pay every single day.” - Jack Padovano, PC Project Board Chair

Share what you want people to know or see about PC here: https://www.pachyonychia.org/awareness-2026/

Address

Holladay, UT
84117

Opening Hours

Monday 9am - 5:30pm
Tuesday 9am - 5:30pm
Wednesday 9am - 5:30pm
Thursday 9am - 5:30pm
Friday 9am - 5:30pm

Telephone

+18019878758

Website

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